Tuesday, May 26, 2009

Guest Blogger: Lyme Awareness Month, Part 1

Readers, today we have a special treat: my wife Kara has written a couple of posts to help us observe Lyme Disease Awareness Month, which has been going on since the first of May. This is the first of two parts.

Thank you, Kara!

If you are a regular reader of our blog, you will know that our family has Lyme Disease. All four of us. Since we have been diagnosed with Lyme, we often get questions about how we all “happen” to have it. Quickly followed by “What is Lyme?”, “How do you get it?”, “What kind of symptoms do you have?”.

We hope that the knowlege you gain here will be of help to you or someone you know and love.

Lyme Disease is the #1 vector borne disease. It is a serious bacterial infection caused by Borrelia Bergdorferi, a spirochete. It is transmitted most commonly by ticks. Once infected, humans can transmit it sexually and also congenitally to the fetus.

A bit about ticks: Ticks are little creatures but they carry big diseases. They can be as tiny as the period at the end of this sentence. Or smaller if they are in the nymph stage. Ticks are found in grassy or wooded areas. It used to be that you would only see ticks in these areas. Today, this is not the case. Ticks are found just about anywhere. The most common place to get Lyme Disease is in your own yard. Most people do not know when they've been bitten.

There are most likely over 100 strains of the pathogenic borrelia (Lyme) bacteria in the United States. It is a spiral shaped bacteria that literally bores itself into the tissues and then inside the cells and hides there. By doing this, it is able to evade the immune system and often goes undetected. This bacteria can also “sense” danger and hide in a cyst. When it does this, it cannot be killed by antibiotics. The cyst must be opened first.

Lyme Disease can either be an acute or chronic infection. The acute illness happens soon after you are infected. Symptoms MAY include a bulls eye rash (really any rash), or a “flu-like illness” within 2 weeks or so after the bite. The infected person may experience fatigue, fever, sore throat, swollen glands, nausea and other more typical flu symptoms. ** The rash occurs in the minority of Lyme infections and is not a reliable indicator. ** OR you may not have any symptoms at all. Remember, this is a very stealthy bacteria. If there are symptoms, you should go to the doctor and be treated with antibiotics. If caught at this phase, often, this is where the infection ends.

If the borrelia is not killed at the acute phase then the infection becomes chronic. This is where it gets tricky. Lyme is a multi system, multi symptom illness. It effects every organ and tissue in the body. Lyme can cause approximately 75 different symptoms which include both physical and psychiatric symptoms. It can “pop” out all at once unexpectedly or slowly percolate over a lifetime coming up 1 or 2 seemingly unrelated symptoms at a time. Symptoms may totally disappear and then pop up years later. If there is a trauma to the body, it may pop out all at once.

No two people infected with Lyme Disease have the same symptom set making it very difficult to diagnose. It is often mis-diagnosed as Multiple Schlerosis, ALS, chronic fatigue, fibromyalgia, Lupus, and arthritis just to name a few. Lyme Disease is known as the “Great Imitator” because of it's ability to mimic other diseases. The average chronic Lyme patient sees 9 doctors before being diagnosed. I was super-lucky in this area – Dr. #28 diagnosed me. The vast majority of chronic lyme patients are treated by a “Lyme Literate Medical Doctor” or LLMD.

Common symptoms of chronic lyme disease include extreme fatigue, dizziness, nausea, diarrhea or constipation, fever, tremors/muscle twitches, burning/tingling sesations in extremeties, numbness, anxiety, memory loss, confusion, depression, weight gain or loss, allergies, muscle aches, joint pain, head aches, sweats, hearing loss, light and sound sensitivity and many others. You can see a more extensive list here and here .


Josi said...

Wow, I had no idea. So, if it's not caught in the early stages, is it incurable? I also had no idea that it could be spread any other way but through ticks. I'll look forward to the next post.

Kara said...

Yes, Lyme can be spread other ways when chronic infection occurs. In addition to the ways I listed are blood transfusions, organ donation, breast milk, etc. Lyme can be in all of them.

Part 2 will answer your question about what happens if the infection becomes chronic. Once diagnosed, antibiotic treatment begins. It takes a long time to kill Lyme and its co-infections. Generally, the longer the patient has been infected, the longer it takes to heal. It can take years of treatment, the average being 3-5. Maybe a little quicker if some alternative therapies are included. Improvement is often seen after a few months. Sometimes HUGE improvement!

The co-infections of Lyme can be completely killed. Lyme is much more tricky. It can hide in cysts which are not effected by the antibiotics. The spirochetes come out to multiply every 3-5 weeks and if antibiotics are in place, they will be killed. However, not all of them "come out." There are some therapies that can target the cysts but nothing "Tried and True" at this point. Research is pushing forward toward better therapies.

Some patients claim to be "cured" from Lyme but then years later can relapse. Or a woman can decide years later to have a baby and it is born sick from Lyme Disease.

Honestly, my gut says that with the treatment methods we have now (including alternative therapies) there is no "cure" for chronic Lyme Disease. There is healing, though. Thousands upon thousands of people have reclaimed their lives and are doing well. Some continue with preventative measures, such as taking Cats Claw (an herb that kills Lyme) as maintenance.

Hope this helps! :-)

Kara said...

There will be links at the end of Part 2 if you want more info. Please watch the movie trailer (last link) for "Under Our Skin." It is also posted on YouTube.

Josi said...

Wow. I had no idea. Will you be updated us on where you guys are at with it? Very informative.

Tristi Pinkston said...

Thanks for making me aware of this awareness month. :)